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Archive for the ‘Adults with Disabilities’ Category

Raise your hand if you did NOT see the Dateline NBC special on adults with autism……..It’s been pretty popular this week and if you haven’t heard about it, perhaps you are living under a rock. We won’t judge you! You can still catch it here.

Rachel Kaplan Working on a Farm

Many parents reported online how sad the show made them feel or how depressed they were for their child’s future. I agree that it can be overwhelming to think about the cost of servicing so many adults with autism or even worse, to think of a loved one without adequate care. However, it is not all gloom and doom. Adults with autism can still learn! Don’t give up hope. To prove this fact, today’s research review describes the results of a study on 4 adults with autism. Lattimore, Parsons, and Reid conducted the study and published it in 2006.The Journal of Applied Behavior Analysis published the study in 2006.

Study Purpose

The authors set out to study and compare the outcomes for adults with autism who received job-site training. One group received training plus simulation while the other group received job-site training only. Researchers taught participants skills such as learning to prepare envelopes for mailing books, emptying trash cans, or preparing packing paper. The study authors taught these skills using principles of applied behavior analysis (ABA).

Study Design

The authors used a multiple probe design across participants to demonstrate experimental control and to analyze the effects of the intervention. This design allowed the authors to rule out extraneous explanations for the study results, and it especially controls for maturation (e.g., the participants getting better due to exposure to the task or simply getting older).

Study Results

Participants who received job-site training plus simulation training made more progress or had higher task performance than those who did not receive the additional simulation training. This was true even if the participant worked only 1 day per week!

So while the future may feel bleak given the limited resources available for adults, it is important to know that adults with autism may still learn. It is never too late to start ABA!

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5,56 mm HS Produkt VHS-D assault rifle

5,56 mm HS Produkt VHS-D assault rifle (Photo credit: Wikipedia)

ABSOLUTELY NOTHING!

I am so tired of hearing people blame the Newtown shooting on Asperger’s.

Let us look at the real explanations for the shooting:

  • an assault rifle
  • hyper media coverage of previous mass shootings
  • lack of treatment for mental health

Bushmaster Assault Rifle

Why would any human (other than military and law enforcement personnel) want or need to own such a weapon? The fact that a mother purchased this weapon and kept it in her house is shocking to me. I once dated a man, who I later found had a gun in his night stand drawer. When I discovered this, I ended the relationship immediately. I do not want to live in the same house with a gun of any sort.

I should share an important side not here. My brother bought his wife a hand gun for her birthday and I still love both of them dearly. But a hand gun is quite different from an assault rifle. There is no need for an assault rifle. Period.

Mass Media Coverage

I am the first person to admit that I love the media. I am a media addict. I watch Nancy and relate to her as my BFF (although my other half refers to her as Nancy Dis Grace). Perhaps it is the behavior analyst in me. I want to understand the psychology and the environmental events that led humans to engage in behaviors that kill. I have the same interest in the Newtown shootings. What led a young man to kill innocent women and children?

Despite my need or desire to know, I would give it all up right now in order to prevent future mass murders. But media coverage alone did not cause the shootings. Media coverage gives people the ideas to do it bigger.

Mental Health Treatment

While we are still in the dark about the events leading up to the shooting, we do know that all the other mass murderers had histories of mental health issues. It seems that only one of those killers had been receiving treatment; but even his treatment was limited. Yet, all of the parents had previously admitted that their child had issues. Clearly, our current health care system failed each and every one of those killers.

Our current health care system does not adequately address the mental health needs of individuals. I sat and listened to hours of testimony at a recent hearing on this very topic in CT. You can listen to the hours of testimony here.

Leaders in each state and in Washington DC need to take action. We need an active plan for preventing these types of violent rampages from occurring again.

There will be a bigger shooting. It is just a matter of time.That is, unless we make changes. We need changes in our gun laws and changes in our mental health treatment. The two entities must work together because individuals with mental illness should not have access to guns of any type.

Post script: Thanks to Rena for pointing out a very important missing piece.

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Hi and welcome to Ask Missy Mondays where I respond to a question from readers. Today’s question came a couple of weeks ago but it took me a while to research the answer. You see one of my best friends passed away after a long battle with colon cancer. You can read more about her story here.

As if her passing were not enough, she leaves behind the most precious 3 year old. How do you tell a 3-year-old child that their parent has died?

Very. Carefully.

And With Honesty.

And Considering religious beliefs.

My heart breaks for Dawn’s Dad. My heart breaks for Dawn’s daughter. My heart breaks for Terri and Steve who will eventually adopt Ava and care for her for the rest of her life.

To assist, I found a few resources for the family.

I Miss You

I Miss You: A First Look at Death Book, is authored by Pat Thomas who happens to be a counselor.  It’s written for younger children. So it may be perfect for Dawn’s daughter. You can read more about it here.

Help Me Say Goodbye

Help Me Say Goodbye might also be helpful. However, Dawn and her family are deeply religious. The activities in the book are not directly tied to God, Jesus, and life in Heaven. So some pages may need to be skipped. Alternatively, adults could get purchase the book and then duplicate the activities that may help Dawn’s daughter (e.g., draw a picture of you and mommy together when mommy was alive). You can read more about it here.

The Invisible String

I found this book while  looking for other resources. The Invisible String is not religious but it is a simply story about love and people who you love. You can read more about it here.

 Samantha Jane’s Missing Smile

Samantha Jane’s Missing Smile. This is a story about death. However, in this book, the Dad dies. It may or may not be good for Dawn’s daughter because it is about a Dad but it may help her relate emotionally. You can read more about this book here.

Other Possibilities

I came across two other possibilities. However, without reading them, it is difficult to know if they will be appropriate. One is called, Where are You (available here) and the other is called “What’s Heaven” by Maria Shriver (available here).

Telling a child that she has lost her only parent must be one of the most difficult situations ever. Surround the child with love and listen with your ears and your eyes.

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Under the Americans With Disabilities Act (2011) and Section 504 of the Rehabilitation Act (1973), a disability is a physical or mental disability that affects a major life activity. What is a “Major Life Activity”?

  • eating?
  • toileting?
  • walking?
  • playing with your family?

Until a disability affects you or one of your immediate family members, you have no idea how great of an impact it is. Try to imagine having to help someone eat 3 meals a day, plus snacks, day after day, after day. Words cannot describe how a “normal” family is affected. Eating out in restaurants? Sorry, we can’t do that. Going on a bike ride? Sorry, we can’t do that either.

Well, we couldn’t do that until just recently. You see, my (Missy) brother has a disability–well, let’s be honest–multiple disabilities (autism, cognitive disability, seizure disorder, mild cerebral palsy). Those disabilities affect many of his life activities as well as some of our family’s activities. Something as simple as riding a bike was too difficult for him. We tried those “special” bikes but since he cannot steer or use the braking system, bike riding just wasn’t possible for him.Plus, how could you get that bike on the bike rack? Sure, this tricycle/bicycle probably works for some people–it just didn’t work for us.

Enter, the Caboose Trailer Bike. This bike attaches to the back of an adult bike. Surely you have seen toddlers riding at the rear of bikes. This bike is similar except that it has two wheels at the back for added stability. The rider does not need to steer or brake. However, the rider has handle bars and fully functioning pedals to enable him or her to participate.

We ordered right from Pedal Cars and Retro dot com. The bike shipped in just a few days. It comes in a box and requires some assembly. However, once assembled, the only work that is required is attaching it prior to the ride. Well, ok…..it does require a bit of work to pedal depending on how much the rider weighs.

The trailer bike does not fit on our bike rack. It does, however, fit in the back of the SUV. So, all 5 of us, and our bikes, and the trailer fit snugly in one package.

Clearly, with my brother tagging along on family outings, we can never have a “normal  life” but that won’t keep us from trying.

We are hanging out again this week over at Yeah Write. Hop on over there to visit other blogs where there are no winners just writers. Or you can head over to the challenge site and help pick out the winners on Thursday.
read to be read at yeahwrite.me

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Hi and welcome to What Works Wednesdays where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.

Readers really gravitated to our story on Monday about adults with disabilities so we thought we would share a success story about one of the adults we have served. Alwan’s adult service provider reached out to us because they needed help with his Self Injurious Behavior (SIB). Alwan hit his head about 2,000 times per month. The SIB was so severe that Alwan was required to wear a helmet all day. Alwan was blind in one eye from the SIB and he was developing cataracts in the other eye. Alwan was 28 years old and carried several diagnoses including profound mental retardation and autism.

Record Review

Because we “inherited” Alwan, we first completed an extensive record review. From the record review we learned that Alwan was heavily medicated in an attempt to decrease the SIB. Alwan had no formal communication system. Alwan had serious feeding issues and was on a strict puree diet. Additionally, he had a protocol for drinking liquids to prevent aspiration. Finally, Alwan had 1:1 staffing all day and 2:1 staffing when out in the community. Additionally, he was “pre-sedated” before all appointments and the staffing ratio on appointments was 4:1.

The record review also referenced a set amount of top spinning time. From the review we learned that Alwan enjoyed spinning tops, lids, etc. We did not, however, understand why this time was limited to only 30 minutes per day.

Functional Behavioral Assessment

The next step was to complete a functional behavioral assessment. We have defined, described, and given examples of these before. To get started, we created an ABC chart for the staff to complete when they observed these behaviors.

We also completed direct observations of Alwan. The observations revealed that Alwan was physically tugged, pulled, and directed all day long. Staff literally dragged him from place to place. Moreover, he had no choice about what to eat, what to drink, or even how to spend his time. Because he lacked communication, staff determined everything for him. The only thing Alwan could control was dropping to the floor and hitting himself in the head.

The observations also provided clarity about the issue around top spinning. When Alwan spent time spinning tops, he became very “worked up” and excitable. All of those behaviors led to an immediate increase of SIB. Essentially, he rocked, flicked the tops, watched them spin, laughed, and then proceeded to hit himself. However, if top spinning did not occur, head hitting was kept to a minimum.

We conducted interviews with staff to find out additional information about Alwan and his behavior. Staff revealed that Alwan really enjoyed walking to the park and riding in the van. Alwan also enjoyed taking a bath.

Many times, SIB is associated with pain, so we asked a few questions to help determine if underlying pain existed. We learned that Alwan had gastrointestinal (GI) issues that needed medical attention so we referred Alwan for a GI workup. Honestly, one bowel movement every 5 days is enough to make us hit our heads a few times.

Finally, we noticed that whenever Alwan was denied something that he wanted, he engaged in head hitting as if to say he was mad about being told no.

Intervention Priority: Communication

Our first concern for Alwan related to his need for a method of communication. We encouraged the provider to hire a speech and language pathologist to help design an appropriate communication system for him. Seriously, who graduates from a program at age 21 without a form of communication? We feel strongly that his IEP team neglected their duty to teach him important skills such as effective communication.

Intervention Priority: Leisure Skills and Reinforcement

We recognized early on that top spinning was a problem. First, it is not an appropriate leisure skill. Second, top spinning was directly correlated with head hitting. Thus, we wanted Alwan to learn new leisure skills. We also wanted Alwan to have more time doing the things he enjoys such as taking baths, going for van rides, and taking walks in the park. It is important for Alwan to have a meaningful day filled with things that he enjoys (and is capable) of doing.

Intervention Priority: Response Interruption and Redirection (RIRD)

Finally

Intervention Priority: Staff Training

We scheduled time for the staff to learn about why challenging behavior occurs. We also reviewed the current BIP and discussed our suggestions regarding changes to the BIP. We taught them how to increase the amount of time that Alwan spent doing things that we liked. We taught them how to interact with him in a way that decreased the amount of time their hands were tugging on his body and increased the amount of time they had positive physical interactions with him. We also taught staff how to implement RIRD.

Outcome

The team is continuing to follow up on Alwan’s GI care. They are making sure that he has regular bowel movements. They are increasing his opportunity for choice in what he eats and what he drinks. They are increasing access to preferred activities such as van rides and trips to the park.

The speech and language pathologist continues to work with staff on developing and implementing a formal mode of communication for Alwan. He is beginning to point to indicate what he wants and needs.

Staff are learning to attend to positive behaviors and to interrupt negative behaviors. They are also learning to interact with and enjoy Alwan.

Most importantly, Alwan has reduced his head hitting to only a few episodes each month! Isn’t it amazing how effective an assessment and function-based approach can be?

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Hi and welcome to Ask Missy Mondays where I respond to email questions from readers who have questions about behavior. Today’s question comes from a list serve on which I participate. The list serve is reserved to parents and guardians of individuals on the autism spectrum. The question actually came about because a reader posted a link to a great story about an adult with disabilities and the lack of resources available for adults once they age out of the school system. You can read the article here.

When people read the article, they became alarmed as they thought about “what would happen to their child with disabilities if/when something happened to them”, the parents/guardians. The sad reality is that our systems are not currently set up to properly care for our loved ones. I know this first hand, as my brother has been in the adult system for 13 years now.

  • housing choices are limited
  • 24-hour staffing is expensive
  • community support staff are underpaid
  • community support staff lack training
  • funds do not exist within state budgets to care for all of those individuals who are going to enter the adult services system

So, what will happen to your loved one when you are gone? I will tell you what we have experienced first-hand: Abuse and Neglect. My brother experienced both of these and I am still around to advocate on his behalf. I never go more than 2 weeks without seeing him. Yet, he still suffered from abuse (broken bones) and neglect (malnutrition and dehydration) on more than one occasion. The details of those stories are for another day (and I book that I am working on). So what do I advise you to do? Start. Planning. NOW.

Guardianship

  1. Follow all the steps to make sure that you have appropriate guardianship/conservatorship as soon as your loved one turns 18.
  2. Make sure that you have a guardian lined up who will take over the duties when you are gone. It will be best to have someone who can start sharing some responsibility now so that the change will not be such a shock.
  3. Guardianship, at this time, does not transfer across states. We learned the hard way. If you are planning on relocating to another state, find out what steps are necessary and get it taken care of as soon as you have relocated.

Housing

  1. It is not normal for your loved one to live with you beyond age 18. Begin searching for appropriate housing options. It can take years to find the right place.
  2. A variety of housing options exist. Choose one that is right for you and your loved one.
  3. You will find it important for your loved one to live near you. Frequent and unplanned visitations are important

Adult Services

  1. Most states have long waiting lists for adults with disabilities. My brother waited for 9 years in Texas before receiving appropriate services. Get on the list today. If you do nothing else for your loved one, register them with the state today.
  2. Be honest about what your loved one needs. We all want to find the positives in our loved ones. However, your loved one will get more services based on his/her deficits. Do not sing his/her praises during the evaluation. Be honest about all the things and types of supports your loved one needs.

Adaptive and Self-Help Skills

  1. Begin teaching your child how to be as independent as possible.
  2. Make sure that the IEP focuses on functional skills. Remember, functional skills are those skills that if an individual cannot do the skill himself, someone else must do it for him.
  3. Refrain from doing things for your loved one. Instead, help them do things. Just last night my brother helped start the fire. He brought the wood in and he opened the glass doors for the fireplace. Every little step counts.

This is a scary and thought-provoking post. I assure you, it is better to think about it now while you are still healthy and able to plan and prepare. We would love to hear from readers who have already begun the planning process. Share your ideas with us!

If you have questions about behavior, email Missy at askmissy at appliedbehavioralstrategies dot com.

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